Using essential aminos for OI ?

xchocoholic

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Hi All,

You all seem to have a good handle on dysautonomia so I wanted to ask you if you understood this ...

I'm not getting the urge to lay down as often, if at all, or that feeling that blood is rushing into my head and upper body or that pounding feeling from my heart anymore when I do lay down so it's got to be these aminos. :) I've been "healthy at rest" for 2 years now and have just been trying to figure out why I still get orthostatic intolerance and PEM.

I was having to lay down for a solid hour every 3 hours to feel "healthy" again. I'm not sure what my BP has been doing because once it normalized via salt loading 2 years ago, I quit taking it.

I've been experimenting with these for about a month now so I'm confident that they're making a difference. For the last 6 months or so, I've been taking other aminos, (carnitine, acetyl carnitine, taurine, tyrosine, DLPA (Phenylalanine) and Lysine) that I heard were good for CFS, but these are the first ones that I've taken that I've noticed anything like this. Although, DLPA + tyrosine combo gave me a bit too much energy but separately didn't do anything. The others appear to have been a waste of money ...

I've been trying to understand how aminos work but in looking at all that essential aminos do for us, it appears that any or all could be responsible. Dysautonomia can have so many causes that any or all of these hold promise.

I have to take 2 of these at a time to get this reaction. I tried and one does nothing for me. And I need them at least twice a day. The only downside I'm seeing is increased digestive gas and the feeling to move faster than my body is used to. Faster is good but it's not a comfortable feeling .. Of course, I have no idea at this point if this is going to last or what. I still get PEM so that's a bummer.

Here's what I'm taking and here are links to what each amino does for us.

http://www.iherb.com/solgar-essential-amin...-caps/9819?at=0

L-Histidine 75 mg *
L-Isoleucine 75 mg *
L-Leucine 75 mg *
L-Lysine (as L-lysine HCl) 75 mg *
L-Methionine 75 mg *
L-Phenylalanine 75 mg *
L-Threonine 75 mg *
L-Valine 75 mg *


http://www.anyvitamins.com/histidine-info.htm

http://www.anyvitamins.com/isoleucine-info.htm

http://www.anyvitamins.com/leucine-info.htm

http://www.anyvitamins.com/lysine-info.htm

http://www.anyvitamins.com/methionine-info.htm

http://www.anyvitamins.com/phenylalanine-info.htm

http://www.anyvitamins.com/threonine-info.htm

http://www.anyvitamins.com/valine-info.htm

If anyone wants to try this with me, that would be great .. thanks ... Marcia
 

xchocoholic

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I found this today while looking for info on aminos and CFS ... Someone already knew this could help ... :rolleyes: Why the hell isn't there any coordination of protocals when it comes to CFS ? How hard can this possibly be ? :mad: OH YEAH ... I forgot, it's up to US ... :eek:


http://www.prohealth.com/library/showarticle.cfm?id=4493&t=CFIDS_FM

Amino Acids Beneficial in Promoting Energy in Chronic Fatigue Syndrome (CFS) Patients

April 9, 2003

Amino acids form the fundamental building blocks of protein and muscle in the body. They synthesize neurotransmitters in the brain and help maintain normal blood circulation, bone strength, and healthy vital organs. They are some of the most important nutrients your body needs to maintain health and vitality.

Research on Amino Acids

Studies have indicated amino acids may be beneficial in promoting improved energy levels in Chronic Fatigue Syndrome (CFS) patients. An open trial published in the Journal of Applied Nutrition1 measured plasma amino acid levels in 25 CFS subjects (16 women and 9 men, ages 23 to 56). Subjects were administered 15 grams of a free-form amino acid mixture containing eight essential amino acids and two semi-essential pharmaceutical grade free-form amino acids, for three months. Five subjects dropped out of the trial, of which two noticed no effect, two developed gastrointestinal distress, and one had a complete relapse of symptoms after two months of modest improvement.

The 20 subjects who completed the trial period and the post-trial questionnaire regarding symptoms showed 75% (15) experienced a 50-100% improvement, while 15% (3) had a 25-50% improvement, and 10% (2) had no improvement. Of those with the greatest positive response, energy levels were reported to increase within two weeks. The most commonly reported improvement was in mental function, with subjects reporting a greatly enhanced ability to concentrate. After the trial, 90% of these subjects continued to take amino acids, reporting a decrease in energy and recurrence of other symptoms when the supplementation was stopped.

Two Categories of Amino Acids

Amino acids can be separated into two nutritional categories, known as the essential and non-essential amino acids. Non-essential refers to the bodys ability to produce an amino acid by itself. There are eleven non-essential amino acids that can be manufactured by the body. Non-essential amino acids perform vital functions; the term simply indicates that the body can obtain these nutrients by means other than the diet. There are nine other amino acids that cannot be manufactured in the body and must come from diet or supplementation. These nine amino acids are known as the essential amino acids.

--Non-Essential Amino Acids: Manufactured by the Body

Arginine, Alanine, Aspartic Acid, Glutamic Acid, Glycine, Histidine, Ornithine, Proline, Serine, Taurine, Tyrosine

--Essential Amino Acids: Obtained through Diet or Supplementation

Cysteine, Isoleucine, Leucine, Lysine, Methionine, Phenylalanine, Threonine, Tryptophan, Valine

Reference:

1. Bralley, J.A., Lord, R.S. Chronic Fatigue & Amino Acids. Journal of Applied Nutrition, 46(3): 74-78(1994).
 

xchocoholic

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I have been taking amino acids for a month too and they help me a huge amount.

I use a drinkable formula that is prescribed for my son. I first tried it because he refuses to drink it (it tastes like earwax) and I was experimenting with ways to disguise the taste, but when I realised how much it was helping I carried on having it. I am not sure how my daily dosage compares to yours but the difference is remarkable. I just wish I could get more of it down my son because he has CFS too and he really needs it.

I have read up that quite a few amino acids are essential for the methlylation and sulphation processes so they run low if you have leaky gut. Also, I believe nearly all PWCs have problems digesting proteins so we are probably low even if we eat plenty of meat.

I have tried taking digestive enzymes (peptidases) by the way, and they helped a bit but nowhere near as much as pure amino acids. I think this is because they need the right pH to work, and the intestine does not have the right pH if the bacterial flora is all wrong.
Hi Athene,

This almost seems too easy doesn't it ? Essential aminos pack a powerful punch and I'm kicking myself for not figuring this out sooner. :mad:

Can you tell me the name of what you're taking ? I just picked up the Solgar essentials at my local HFS because it contained just the essentials .. I still want to learn about proper dosages, the best way to get our aminos, etc even though this one is working so well.

I read what you did about the methylation and sulfation cycle too. I was able to take the B12 and folate that Rich recommends full strength the first time I tried it so that means my body wasn't as weak as some people's. I was taking Metagenics Vessel Care, but ran out 2 weeks ago. My B12, folate and glutathione are good anyways though. BTW. This made no difference whatsoever in my orthostatic intolerance or PEM ..

I'm so glad you said what you did about taking digestive enzymes and eating meat not helping as much as these essential aminos are. ME TOO ... :)

I've been Paleo for 2 years and knew that I had to eat meat for muscle strength but the body strength and endurance that I get from these is better than what I was getting from the diet and enzymes.

I saw that aminos are the building blocks for enzymes so I wonder if this applies to digestive enzymes too. I couldn't find that when I googled it but I may have googled the wrong thing.

I read that too many aminos can affect our kidneys so I slowly weaned myself off carnitine, acetyl carnitine, taurine, tyrosine, DLPA and Lysine. I've since figured out that I still need the Lysine and probably the acetyl carnitine for now. I took the acetyl carnitine yesterday because I wasn't thinking as quickly as I know I can and it worked like a charm ...

It's nice when something works this well ... :D
 

xchocoholic

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Hi Athene,

I found this and guessed that you're using the Junior, but coudn't read the ingredient list anyways since I don't recognize the language.

http://www.neocate.com/aaa_neocate/1128-neocate-home-page.html

I was curious as to why it has glucose and pre-digested fats. Any ideas ? Sure glucose gives us energy and fats make our cells more accessible but do aminos need these to break down ? Since this is considered a meal replacement, maybe that's the only reason it's there. Whereas as long as we're eating regular food we don't need these.

Maybe I should be taking mine with EFA's or MCTs (coconut oil for me) ... I'll try it with EVCO here in a minute. I've been taking these with an Emergenc and multimineral supplement so far. I've been taking the Emergenc and minerals for almost a year now anyways though ...

The Solgar essential free form aminos cost approximately $9 - 10 for 30 and each capsule contains 75 mg. Less if you get 90 capsules. I'm not sure how much you're taking so I can't compare these. I need 2 capsules at once to get a reaction.

If your son can take supplements this would work. It's a big capsule but no where near as big as a Lysine capsule. If he can't take these, you might have better luck opening it up and slipping these into your son's smoothies. I'm not sure it that's ok but since aminos are found in powder form all the time I can't see why not ...

TC .. Marcia

PS. I wanted to make sure that everyone understood that this isn't a majic cure for fatigue. I still feel better if I lay down every few hours, I'm just not getting those feelings like the blood is rushing to get back into my head or upper body and my hearts not freaking out over all the comotion ...:rolleyes:

http://www.amazon.com/Nutrition-Bible-Comprehensive-No-Nonsense-Preservatives/dp/0688155596

It's $77 new and less than $4 used. I'll look at my library though .. honestly, I just need amino info though ... and the internet has been great so far. : )
 

ariel

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I've been following the Jonathan Campbell protocol that someone posted on the first page of the 'Natural Anti-Retrovirals' thread in the XMRV section for about three weeks now. And the amino acids that he recommends have made a massive difference to me. So much so that I can't quite believe it still.
He recommends taking Lysine, Proline, Glycine and Arginine along with Vit C and Green tea. He seems to have devised this treatment protocol a few years ago for CFS and for HIV sufferers.

Athene I didn't realize that Arginine stops Lysine from working properly. Weirdly this doesn't seem to be a problem for me at the moment. The combo is working really well.
 

Andrew

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Thanks, xchocoholic. I wonder if it's possible to find out what doses they were using. Sometimes these treatments use mega-doses that won't fit in capsules.

BTW, there is a CFS doctor who specializes in amino acids. Here's his site. I've heard good things from people right after the first couple of visits, but I don't think we can go by that. There is usually a honeymoon phase with a doctor who is kind and understanding.

I found this today while looking for info on aminos and CFS ... Someone already knew this could help ... :rolleyes: Why the hell isn't there any coordination of protocals when it comes to CFS ? How hard can this possibly be ? :mad: OH YEAH ... I forgot, it's up to US ... :eek:


http://www.prohealth.com/library/showarticle.cfm?id=4493&t=CFIDS_FM
 

susan

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Dont you think it is worth the expense to get a amino urinary profile done to measure Exactly what aminos you need rather than guessing. Yes I know it is expensive but it could mean the difference in getting much better or not improving at all.
 

SaraM

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amino urine profile

Dr. Klinghardt believes the urine test shows how much amino acids one is losing, and not a good choice. A blood test is what he suggested. Somebody posted his video links on the forum.
 

xchocoholic

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Ariel,

One of the reasons I'm interested in taking the essential aminos and not the others is that I read that some non essential aminos can interact poorly with the Kreb's cycle and should be avoided. Glycine was mentioned but I didn't read past that since I'm going to stick with the essentials.

IMHO, Since PWCs have damaged Kreb's cycles, it just seems like a good idea to me to give our body the nutrients it needs and allow our bodies to do what it does naturally ... and hope it works ... ;)

Arginine competes with Lysine so you must have these balanced if you're positive for Herpes.

Thanks Andrew,

This doctor really gets it .. Here's a link to his strategy.

http://www.aminoacidpower.com/currentHealth/chronicFatigueSolutions

Susan,

My doctor mentioned that at my last appt but I was already taking these aminos so I figured I'd just stick with them for now. Since they are helping I see no reason to stop ...

Sarah

Thanks for the info. My doc had suggested the urine test ...

I just got a phone call so I have to run but I'll look more closely at this later ... thanks I appreciate the feedback... Marcia
 

ariel

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Hi Xchocoholic,
Eeekk. Now I'm a bit confused. I must admit to knowing very little about amino acids, and infact also not knowing that much about Kreb's cycle as well. I was just desperate (!) a little while ago and decided to give those four amino acids a try.
Yes I am positive for herpes (EBV), so does that mean I should stop the Arginine... ?
And maybe I should just be taking the essential amino acids...
As I wrote I have been feeling great ever since starting them, but I've just realized that over the last few days I'm subtly sliding back down again.

Sigh. If only things were ever so slightly clearer.
 

xchocoholic

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Thanks Ariel,

This is a real pain, isn't it ? I'm too new at this to offer advice but I can tell you my experience. Googling Kreb's cycle is the easiest way to see how this works. There's a chart somewhere but I can't remember where right now. Basically, it's what our bodies go through to create energy.

Since you're positive for herpes, I'd stop the arginine if I were you. I read that it's only essential in children and not for adults. FWIW ... It's something they give kids in the autism spectrum for pain associated with oxalates. It was recommended to me for vulvodynia pain, but with my Herpes, I'm unable to take it .. soooo, if you have additional pain from stopping this, you may want to look at it further. FWIW whatever pain I experience is usually gone within a few hours anyways so it's not worth treating.

I copied this in from the first link you gave. I'd read this elsewhere too. :D

Several essential amino acids supply precursors to the tricarboxylic acid (TCA) cycle for ATP production as well as precursors for neurotransmitters. Oral administration of specific amino acids can significantly affect these processes.
:D:D:D:D


I'm a little concerned with how they administered the dosage in this study. 15grams a day seems extremely high. The Solgar essential aminos are only 600 mg total and the RDA is 1 capsule. There's no way I could tolerate the dosage in this study. I was jumping out of my skin when taking 2 - 600 mg of Solgar essential amino capsules at one time for a few days in the beginning and that was after slowly building up my tolerance.

I'm still playing with the dosage here but this feeling appears to have stopped a few days ago. I decreased the dosage today and am still not having that heart pounding symptom or blood rushing into my head when I lay down but I'm not sure if I'm going to have to increase it again or not. These obviously build up in our bodies so it may be too early to cut back.

My other concern with this study is that they spent 3 months on the same high dosage. My body's amino acids requirements change much quicker than that. I lowered my theanine from 100 mg every 3 - 4 hours within 2 days because my jittery feeling was gone FINALLY and I was feeling sluggish during the day. I was told that feeling sluggish during the day was from too much theanine. And now 4 months later, I'm at 50 mg at nite always. They would've booted me out of the study ... ;)

Oh and I don't understand why they were given Taurine when it's a non essential amino. I took 500 mg Taurine a day for 4 - 6 months but weaned myself off of these and my other non essentials except theanine and 5HTP, when I started taking these essentials. I tried taking one of these today and felt like my heart / adrenals were racing ... so, I'm not sure it's a good idea to supplement with non essentials when taking essentials. Not that I know for sure but it seems like my body had plenty of "homemade" taurine on hand. :cool:

I'm still experimenting here though so I may end up taking some other non essential amino down the line. Not anytime soon though ... Since the sleep aminos took 4 months to adjust too I would think that these would take that long too ..

Let me know what you do ... TC ... Marcia
 

xchocoholic

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Dear xchocoholic,

The link you posted to Neocate is the right one.

I just wanted to clarify that the fats, glucose etc in Neocate are only there because it is a complete artificial food for people who cannot eat any normal food. (They use it for feeding peope through naso gastric tubes etc.) These extra nutrients are not there for synergistic effects with the amino acids.

However you do need important cofactors to make best use of amino acids.
The table on the Neocate website shows the ideal relative quantities of amino acids. However this is for a theoretical "healthy" person, whereas in the real world, any specific pathology means a certain person may need far more of one type of a given amino acid that another person would.

My son developed protein deficient malnutrition and the panel of doctors looking after him said you cannot do a relaiable test to find amino acid deficiencies. In urine, you are testing what the body rejects, and in blood, you are testing what the person has eaten recently. They said you have to be smarter than this and figure out what the person needs, based on their illness. The body kicks out whaever amino acids it does not need, but this places a strain on the liver which has to do the detoxing, so it is important not to overdo it.
Athene,

I looked at the Neocate site and never could find that table. If you have time could you get a link for me ? thanks ...

That's interesting that what's in the urine is what the body rejects. Makes perfect sense when you think about what urine is ... excreted toxins ...

I'm working on not overdoing aminos either via supplements or meat. It's funny these aminos are suppressing my appetite but I can't tell if it's because I feel full longer or if they are upsettting my stomach acid or what ... do you run into this ? I keep realizing that I forgot to eat ...

tc ... Marcia
 

Tony

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Researcher on amino's

CFS researcher Prof Tim Roberts, recently was promoting amino acids for CFS people who are "skinny". He's also done some research on autism.

He was saying they would help to promote weight gain. The only problem I have with the product is that it contains FOS, not a good choice for me. And at 9.4gms it's a lot of amino's.
http://www.fatiguereviva.com/timroberts.html
 

ariel

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Thanks xchocoholic! Have stopped the arginine. Realized that Campbell probably put it on his list because it is good for people with HIV, and so therefore hopefully good for people with XMRV, ... though seeing as I don't even know if I'm positive for it I was probably jumping the gun. And it was starting to cause my Epstein Barr to flare up again! silly me!
Learning, learning.
Interesting re the taurine, Athene.
Looks like there is lots more learning to do!
 

xchocoholic

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Due to the holidays and a quick trip to California for a week :D I haven't had time to check out all the links here. But Thanks for posting these and I'll read these just not in the next week or so. I just wanted to update this real quick tonight.

I'm still taking the Solgar essential aminos and have noticed that I still require 2 at a time to feel better. One is useless ... Normally I take 2 capsules 2 - 3 times a day. Lately, I've been taking these in the am everyday when I first wake up and they seem to stop me from feeling like laying down all day long. :) I probably need to watch this though because I shouldn't be pushing myself to stay upright even though my body isn't requiring me to lay down several times a day everyday.

I still get fatigued / light headed with exertion (walking / shopping especially) so this hasn't helped with that. I've tried supplementing with glycine, taurine, DLPA and tyrosine separately and combined when this happens to see if helped but nothing other than eating a snack (usually a banana w/ sunbutter) and sitting for a few minutes works. It used to take lying down for an hour for me to feel refreshed again, so that's good ...

This is still in the experimental phase though so we'll have to see. It took 4 months for my body to adjust to the sleep supplements / aminos I take so I expect this to take time too. I just hope I don't crash ...

Anyone else still on these ?
 
C

Carter Burke

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I added amino acids to my protocol and got immediate results.

I use much higher doses though.

L-Glutamine 15g (in three doses throughout the day)
BCAAs 10g (two doses)
((Leucine, Isoleucine, Valine))

Glutamine's only effective in higher doses. The best study I've seen used 10g/day.


Bodybuilding/sports powders are a much cheaper way to buy them usually.

Myprotein (for UK people) can work out tens (maybe hundreds?) of times cheaper than buying pills. http://www.myprotein.co.uk/bulk-powders/amino-acids/essential-amino-acids/

Per 15g serving:
L-Leucine 5000mg
L-Isoleucine 890mg
L-Valine 2200mg
L-Lysine 2200mg
L-Phenylalanine 1800mg
L-Threonine 1500mg
L-Histidine 710mg
L-Methionine 500mg
L-Tryptophan 200mg

37.40 for a kilo!
 

xlynx

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Thats really interesting.

I have been taking the product Daily Energy Infusion from fatigued to fantastic that contains these amino acids as well as alot of other vitamins and had been doing great on it. I then stopped it as I stopped juicing I got lazy and my health started to really nose dive, 5 days ago I restarted it with my morning veggie juice and it is giving me a serious boost. I cant believe I stopped this.

I wonder if it is the amino acids in particular are whats working.

https://www.prohealth.com/shop/product.cfm/product__code/N0389/tab/Label#title
 

xchocoholic

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Great discussion ... thanks ...

I was using NOW pea protein, Metagenics Ultra Clear and a few other rice protein powders every day but never felt any better or worse from them. I just used them because I was told too. More money down the drain ... :rolleyes: And those were a much higher amino count than what I'm taking now.

I "think" the problem for me was the glutamine since gluten causes me to get nuero reactions, dairy causes raccoon eyes, soy causes phlegm immediately and corn just makes me feel weak ... All of these are very high in glutamates.

I say "think" because I don't have a biochemistry background and I never really took the time to understand how glutamine, glutamates and glutamic acid are related. DogtorJ has some good info on glutamates though .... I had no idea that these four foods were related until I saw DogtorJ's info.

The Solgar essential aminos appear to be free of glutamates since it's free of gluten, soy, corn and dairy.

Two of these first thing in the am before getting out of bed seem to be key here too. And I just read that our bodies don't store aminos so we need to keep replenishing these throughout the day. I've been taking 2 of these at 3 - 4 hour intervals so I may increase these since it's such a low dosage. These suppress that hypoglycemic feeling that I have to eat every few hours too.

TC ...
 

xchocoholic

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I found this article tonight .. it's a longer more detailed version of the CFS / amino acid study from 1994 ... and it includes comments.

http://www.metametrixinstitute.org/...with-Specific-Amino-Acid-Supplementation.aspx

And then I found this article on the same site ... evidently, it takes awhile for our bodies to create non essential aminos from essential aminos if we were missing these.

http://www.metametrixinstitute.org/post/2008/06/11/Case-Study-Blood-Spot-Amino-Acids-in-Fatigue.aspx

FWIW ... I'm still doing well on these. KOW ... :cool: